National COPD Awareness Month

2018 Outreach Toolkit

Contents

The month of November provides the COPD community with a distinct time to come together and focus on increasing awareness of the disease. Across the country, organizations are conducting outreach and holding events to talk about COPD with Americans at risk for and living with the disease. Collectively, these activities help to elevate COPDand reach millions of people.

The Theme 2

Weekly Topic Calendar 3

What You Can Do 4

Share Your COPD Perspective 5

Suggested Content 6

Shareable Graphics & Other Resources 8

Facebook Content 9

Twitter Content 10

Helpful Tips for Posting on Social Media 11

What Else You Can Do 12

General Announcement on National COPD Awareness Month 13

General COPD Talking Points 14

Public Service Announcement (PSA) Outreach 16

COPD Perspective Templates 17

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The Theme

The COPD Learn More Breathe Better® (LMBB) programis undertaking a variety of activities this November and we hope you will join us in sharing resources and educating others about COPD – all under one theme:

The COPD Journey: Perspectives

This year, the theme is a continuation of the #COPDjourney, with a focus on the different roles and experiences of people living with COPD, their loved ones and caregivers, health care providers, advocates and researchers, among others, via #COPDperspectives.

Throughout November, we will share content on signs and symptoms, diagnosis, risk factors, prevalence, treatment, and management of COPD, and highlight the perspectives and roles of those affected by the disease and involved in its care.

We will kick off each week by announcing a weekly focus on Facebook and Twitter. Then, we will share additional resources and information throughout the week and are asking you, our partners, to do the same.

This Toolkit outlines what we will cover and opportunities to work together. The recommendations can be tailored based on your capabilities and resources, as well as your community’s needs.

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Weekly Topic Calendar

Topic Area & Perspective

What WeWill Cover

WEEK 1:

Signs and Symptoms:Patient Perspective

Overview of COPD and what people need to know to recognize and understand the disease

WEEK 2:

Diagnosis:Health Care Provider Perspective

Overview of how COPD is diagnosed and the role of the health care provider

WEEK 3:

Prevalence: Researcher and Academic Perspective

Overview of COPD prevalence, risk factors, and demographic differences

WEEK 4:

Treatment and Management:Caregiver Perspective

Overview of COPD treatment, management, and support

WEEK 5:

What’s Next for COPD: Community Perspective

Overview of ongoing outreach activities to reduce the burden of COPD

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What YouCan Do Each week, join us on Facebook and Twitter to learn

about COPD and share your perspective! The chart on the previous page outlines the weekly topics. Find the areas of most interest to you and your organization, post your thoughts, photos, and/or share your own resources. For example, in Week 1 you may share tools that you have on signs and symptoms and what you want people at risk for COPD to know, as we will highlight the patient’s perspective, or in Week 4, consider highlighting resources for caregivers, as we focus on management of the disease.

On the following pages, you will also find suggested posts for Facebook and Twitter that you can customize, as well as tips on best social media practices. Be sure to tag @BreatheBetter on your Facebook posts and use the hashtags #COPDjourney and #COPDperspectives on Twitter.

Not using social media?Here’s what else you can do:

• Announce National COPD Awareness Month in your internal and external publications.

• Reach out to local media and encourage them to include stories on COPD.

• Encourage your local radio stations and news outlets to run public service announcements (PSAs).

We also have tips that may assist you in general outreach. No effort is too small in helping bring greater attention to COPD. If you have any questions, don’t hesitate to reachout to the COPD Learn More Breathe Better teamat nhlbiinfo@nhlbi.nih.gov.

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We will start the conversation each week on Facebook and Twitter with content aligned with the weekly focus and then share additional information daily. We encourage you to develop content, too! Only through your participation can we truly capture the many perspectives of COPD and all that is involved in diagnosis, care, and education.

Each week offers a new opportunity to share your and/or your organization’s advice and perspective on COPD, so you may join in on the conversation several times throughout the month. We encourage you to allow multiple people from your organization to join. COPD is a complex topic and not everything can be covered with one single post.

How to Get Involved:

Use the suggested prompts and templates below and add your perspective, advice, and resources. Once done, simply post to Facebook and/or Twitter! Tag @BreatheBetter and/or use the hashtags #COPDjourney and #COPDperspectives. Doing so allows us to find your posts, like, and share them. At the end of the month, we hope to have a collection of photos, quotes, and resources that show the breadth of people working tirelessly on raising awareness and educating about COPD nationwide.

ShareYour COPD

Perspective

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Suggested Content

Topic AreaWHAT WEWILL COVER

The PromptTHEFOCUS

Your PerspectiveWHAT YOUMAY COVER

WEEK 1: SUGGESTED DATES TO POST ARE NOVEMBER 1-4

Signs and Symptoms: PatientPerspective

National COPDAwareness Month is important because…

What I want peopleto know about COPD…

• Why is raising awareness about COPD important to you?

• What advice do you have for people at risk for COPD?

• How can we get more people to recognize the signs and symptoms of COPD?

WEEK 2: SUGGESTED DATES TO POST ARE NOVEMBER 5-11

Diagnosis:Health CareProviderPerspective

COPD diagnosis is important because…

What you should askyour health careprovider about COPD…

• Why is seeing a health care provider important?

• What questions should people ask their health care provider about COPD?

WEEK 3: SUGGESTED DATES TO POST ARE NOVEMBER 12-18

Prevalence:Science and ResearchPerspective

COPD research is important to me because…

This is what COPDlooks like in my state…

• What should future COPD research focus on?

• What kind of research are you excited about?

• What is your home state and how many people have COPD?

WEEK 4: SUGGESTED DATES TO POST ARE NOVEMBER 19-25

Treatment and Management:CaregiverPerspective

My advice for people caring for someonewith COPD…

I manage my COPD with…

I am able to stay active by…

• What resources and advice do you have for people caring for someone living with COPD?

• How has your treatment plan helped you manage the disease?

WEEK 5: SUGGESTED DATES TO POST ARE NOVEMBER 26-30

What’s Next for COPD:Community Perspective

I work to reduce the burden of COPD because…

The COPD National Action Plan…

I support the COPD National Action Plan through…

• Why do you work to help people with COPD?

• What other resources and advice do you have?

• What do you want the COPD National Action Plan to accomplish?

• How are you putting the COPD National Action Plan into action?

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For handwritten perspectives, simply take a photo of your note, then post using the hashtags in your message. See the Appendix for full-sized templates. We have provided samples below:

Other Prompts

If the prompts mentioned previously don’t quite capture what you want to say, feel free to add your own or use these additional prompts at any time throughout National COPD Awareness Month.

• I want…

• We need…

• What I want others to know…

• I care, because…

• I raise awareness by/because/with/for…

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There are other opportunities to participate beyond sharing your perspective. We welcome you to use our prepared content and/or graphics, in addition to our state-specific shareables. See below for suggested content!

Some of the materials may be available for cobranding. If interested, please contact nhlbiinfo@nhlbi.nih.gov to discuss these opportunities. Additionally, check out other existing program resources, such as fact sheets, infographics, and research reports.

Download these images.

ShareableGraphics& Other

Resources

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Suggested Content ImageOther Ideas forContent You Can Share

November is National COPD Awareness Month! Join us & @BreatheBetter on the “COPD Journey: Perspectives” to raise awareness about the disease.

National COPDAwareness Monthshareable fromthe Outreach Toolkit.

Share how you will mark National COPD Awareness Month.

Share signs and symptoms of COPD; what is considered normal and what is not; and what you want people to know.

Ongoing coughing, shortness of breath, wheezing or chest tightness? These are all signs of COPD but everyone will experience them differently. Follow along on the COPD Journey with us and @BreatheBetter to learn more about its signs and symptoms.

Consider using an image of a health care providerand patient talking.

Share resources you have on diagnosis (e.g., educational materials, fact sheets, studies) and how to prepare for a doctor’s appointment.

Provide details about how you and/or people you know have been diagnosed.

If you took a journey across the United States, you’d find that the number of people with COPD differs from state to state. In [ADD YOUR STATE], [ADD # OF PEOPLE DIAGNOSED] are diagnosed. For details on other states, check out @BreatheBetter’s state shareables.

State shareables on the COPD Learn More Breathe Better website.

Share details on prevalence in your region/state and the main risk factors in your state.

Today is World COPD Day. According to the World Health Organization, the disease affects 251 million people worldwide. In the U.S., 16 million Americans are diagnosed with the disease and it is estimated that millions don’t realize they have it. But there is good news: COPD is manageable. Learn about treatment and management via @BreatheBetter.

World COPD Day shareable fromthe Outreach Toolkit.

Share tips for managing COPD; this could include support groups and resources you have available; provide advice and resources for COPD caregivers; celebrate Thanksgiving.

National COPD Awareness Month is almost over, but the COPD Journey continues. Last year, the COPD community released the COPD National Action Plan. It is a unified framework for everyone across the country to help reduce the burden of the disease. Join us, @BreatheBetter, and @NHLBI and learn moreat COPD.nhlbi.nih.gov.

COPD National ActionPlan shareables.

Share how you are putting the COPD National Action Plan in action/ideas for the future to reduce the burden of COPD.

Thanks for joining us and @BreatheBetter on the COPD Journey this National COPD Awareness Month! To learn more and stay involved, visit [INSERT YOUR ORGANIZATION’S URL].

National COPDAwareness Monthshareable fromthe Outreach Toolkit.

Share your own resources and how people can learn more about COPD and how to stay involved.

THURSDAY,NOVEMBER 1

WEEK OF NOVEMBER 5

WEEK OF NOVEMBER 12

WORLD COPD DAY ON WEDNESDAY, NOVEMBER 21

WEEK OF NOVEMBER 26

FRIDAY, NOVEMBER 30

SUGGESTEDPOST DATE:

Facebook Content

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Suggested Content ImageOther Ideas forContent You Can Share

It’s National COPD Awareness Month! Join us & @BreatheBetter to learn more about #COPD because everyone’s #COPDjourney is different. #COPDperspectives

National COPD Awareness Month shareable fromthe Outreach Toolkit.

Share how you will mark National COPD Awareness Month.

Share signs and symptoms of COPD and what you want people to know.

Take the first step in breathing better. Talk to your health care provider about #COPD. #COPDjourney

Consider using an image of a health care provider and patient talking.

Share resources you have on diagnosis (e.g., educational materials, fact sheets, studies); provide details about how you or people you know have been diagnosed.

Next stop on the #COPDjourney, we’re talking about how many people have #COPD. In [ADD YOUR STATE], [ADD # OF PEOPLE DIAGNOSED] are diagnosed.

State shareable graphics on the COPD Learn More Breathe Better website.

Share details on prevalence in your region/state and the main risk factors in your state.

#COPD affects more than 16 million people across the country. The good news is that the disease is manageable. #COPDjourney

Consider using an image of a group of people; or you and your organization sharing resources.

Share tips for managing COPD. This could include support groups and resources you have available or advice and resources for caregivers.

Today marks #WorldCOPDDay. According to @WHO, #COPD affects 251 million people worldwide. #COPDjourney

World COPD Day shareable fromthe Outreach Toolkit.

Share your efforts made in your community or interesting research you are seeing globally.

The #COPDjourney is not over! Last year, our community launched the #COPDActionPlan and we are joining with @NIH_NHLBI to continue to stay involved!

COPD National ActionPlan shareables.

Share how you are putting the COPD National Action Plan in action/ideas for the future to reduce the burden of COPD.

Thanks for joining us and @BreatheBetter on the #COPDjourney this National COPD Awareness Month! To learn more and stay involved: [INSERT YOUR ORGANIZATION’S URL]

National COPDAwareness Month shareable fromthe Outreach Toolkit.

Share your own resources and how people can learn more about COPD and how to stay involved.

THURSDAY, NOVEMBER 1

WEEK OF NOVEMBER 5

WEEK OF NOVEMBER 12

WEEK OF NOVEMBER 19

WORLDCOPD DAY ON WEDNESDAY, NOVEMBER 21

WEEK OF NOVEMBER 26

SUGGESTEDPOST DATE:

Twitter Content

FRIDAY, NOVEMBER 30

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Helpful Tipsfor Posting on

Social Media

To help you with your social media content for National COPD Awareness Month and beyond, here are some best practices to get you started.

• Tag the handle of whomever the message is speaking to orreferencing. To tag the handle in your post on either Facebookand Twitter, begin by typing the @ symbol in your postimmediately followed by “BreatheBetter” — all as one word. Itshould look like @BreatheBetter. When the LMBB handle appears,click it to lock in the tag.

• Ask questions or open the floor for discussion to drive engagement.

• Post, or schedule posts, when your followers are most active.

• Use visuals when possible, to catch the users’ eye as they scrollthrough their feed and to give them your perspective or a behind-the-scenes look. Share personalized content, such as your team inaction. Remember, users move through their newsfeeds quickly.

• Be consistent with the amount of posts so that your followerscan expect a certain drumbeat of new information.

• Write for each specific platform and audience. The life of atweet is much shorter and can accommodate less content thanthat of a Facebook post.

• Use hashtags on Twitter to become a part of the conversation.More generic terms like #COPD or #respiratory will giveyou a broader audience. For example, instead of writing#COPDHealthNews, use #COPD and #healthnews separatelyto stay in both conversations.

With any of the content, make sure to use the hashtags #COPDjourney and #COPDperspectives, as appropriate, and/or tag @BreatheBetter. It will help us find your post so we that can like and share your contribution and perspective!

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What ElseYou Can Do

The first step to raising awareness is getting your message out. Listed below are best practices to use when reaching out to the media, a general announcement about National COPD Awareness Month, talking points, and suggested outreach to share existing public service announcements (PSA). The talking points are meant to be a conversation starter and can be used in external engagement efforts, including with members of the media, PSA directors at your local broadcast station, local health facilities, or the public in general.

For additional resources on COPD, visit COPD.nhlbi.nih.gov; for details on prevalence, visit the Centers for Disease Control and Prevention (CDC) website for nationwide COPD data and the 500 Cities Project. Or find yourstate and share our COPD state shareable graphicson social media, available at COPD.nhlbi.nih.gov.

Best practices for reaching out to media outlets Media may include your local newspaper, radio, or TV station. Often, email will be the first step in your outreach. Keep in mind the following tips when reaching out to members of the media:

• Tailor your email to the specific media outlet and reference whytheir audience should care about the topic. Examples include theimpact in your state or community, an activity at a local organizationor health care facility, or mention of a recent story thatmay be relevant.

• Share data if you can. Data can open the door to a largerconversation. This includes how many people in your state orregion are affected by COPD. Take a look at the state shareablesfor specifics on the number of people diagnosed acrossthe United States.

• Offer a person willing to be interviewed. This can help clearthe first hurdle for placing a story and offer a local angle.

• Reporters often value already prepared content, suchas pre-drafted quotes or developed materials like a PSA.

• Follow-ups with the media outlet or reporterare generally appreciated.

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GeneralAnnouncement

on National COPDAwareness Month

At the beginning of November, the followingtemplate language can be used for publishingon your websites, blogs, or newsletters.

November is National COPD Awareness Month

Chances are high that you know someone with chronic obstructive pulmonary disease (COPD). More than 16 million Americans have been diagnosed with this debilitating lung disease and it is estimated that millions more have it and don’t know. This November for National COPD Awareness Month, join [INSERT ORGANIZATION] in raising awareness about COPD. Whether you’re a patient, caregiver, health care provider, advocate, or researcher, share your perspective. We all have a voice when it comes to COPD and we should use it to help people understand and recognize it earlier, so they can receive treatment to breathe easier.

Signs and symptoms of COPD such as shortness of breath, chronic coughing, and wheezing often come on slowly, which can delay diagnosis. Often, people mistake their breathing issues as a part of aging or a consequence of being out of shape. While there currently is no cure for COPD, early diagnosis and treatment can greatly improve quality of life. National COPD Awareness Month is a great time to encourage others to recognize symptoms and talk to a health care provider.

For more information about COPD, visit [INSERTORGANIZATION LINK] or the COPD Learn More Breathe Better® program at COPD.nhlbi.nih.gov.

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General COPD Talking Points

Chronic obstructive pulmonary disease (COPD), also known as emphysema or chronic bronchitis, is a serious lung disease that over time makes it hard to breathe.

COPD is a leading cause of death in the United States and is also a leading cause of disability. While more than 16 million Americans have been diagnosed with COPD, it is estimated that millions more have the disease without realizing.

Part of the reason for this disparity in diagnosis is that the symptoms of COPD, such as shortness of breath, chronic coughing, and wheezing, come on slowly and worsen over time. Many mistake these symptoms as a part of aging or a consequence of being out of shape and, as a result, will delay seeking a diagnosis. At the same time, health care providers state that one of the biggest barriers to diagnosing COPD earlier is that patients do not fully report their symptoms – signaling a communication gap in the exam room.

• Review this infographic for more information on the health care provider communications gap.

• Read the latest report on individuals affected by COPD, their caregivers, and the physicianswho diagnose and treat them.

CDC data reports that COPD is almost twice as common in rural areas of the United Statesthan in urban areas.

According to data from the Centers for Disease Control and Prevention (CDC), more than [INSERT YOUR STATE STATISTICS] in [YOUR STATE] have been diagnosed with COPD – however, given the statistics, we know that many more people are affected, but have yetto receive a diagnosis.

• Find data specific to your state via CDC’s Behavioral Risk Factor Surveillance System (BRFSS) website.

• Discover local data through the 500 Cities Project, a collaboration between CDC, the Robert WoodJohnson Foundation, and the CDC Foundation.

Two of the biggest reasons people who have experienced symptoms consistent with COPD say they have not talked with their health care provider is that they just “didn’t think of it” or they “have had these problems for years.”

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General COPD Talking Points (continued)

COPD is more common than many people realize. One out of five adults in the United States over the age of 45 has COPD. Risk factors include a history of smoking (both current and former smokers), long-term environmental exposure to things that can irritate your lungs,as well as certain genetic conditions, such as alpha-1 antitrypsin (AAT) deficiency.

• Seventy-five percent of COPD cases are directly associated with cigarette smoking.

• Exposure to lung irritants — such as dust and chemicals in the workplace or other fumes — and exposure to secondhand smoke or air pollutants may contribute to COPD.

When left untreated, people with COPD gradually lose their stamina and their abilityto perform daily activities.

According to the BRFSS, an annual survey conducted by the CDC, almost two-thirds of people diagnosed with COPD (63.8%) report that the disease has negatively impacted their life.

The good news is that with proper diagnosis, COPD can be treated. And, it can be diagnosed by a health care provider during a regular office visit with a simple breathing test called spirometry.

While there is no cure for COPD, with early diagnosis and treatment, people with COPDcan alleviate their symptoms and begin to get back to the things they love doing.

The first step is initiating that conversation in the exam room. By learning more about COPD, recognizing the symptoms, and talking with a health care provider, people with COPD can take the first step to breathing better.

Learn more about COPD and visit [INSERT YOUR WEBSITE] and COPD.nhlbi.nih.govfor more information and resources.

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Public ServiceAnnouncement (PSA) Outreach

Use the following messages to encourage local media outlets to run our radio PSAs or use the customizable live-reads below. Visit COPD.nhlbi.nih.gov for more media resources from the COPD Learn More Breathe Better program.

• Please consider running the COPD Learn More Breathe Better® program’s PSAs this November and whenever possible to increase awareness of COPD symptoms and encourage discussions with health care providers.

Find radio and print PSAs on the COPD Learn More Breathe Better® website.

• Discuss COPD and encourage your [VISITORS/LISTENERS/ READERS] to take notice of the signs and symptoms of COPD and educate them that the first step to breathing better is talking to their health care provider. The more common these conversations become, the more people will be able to recognize the signs and symptoms and have important conversations in the health care setting.

• The COPD Learn More Breathe Better® program is an education and awareness initiative of the National Heart, Lung, and Blood Institute, part of the National Institutes of Health. [INSERT ORGANIZATION] is a partner of the program as a member of the Breathe Better Network.

• We encourage you to make your [READERS/LISTENERS] aware of the symptoms of COPD throughout the fall and winter, when tasks like raking leaves or shoveling snow can leave those with COPD struggling for air, or during coldand flu season when people with COPD are particularlysusceptible to becoming seriously ill.

• Help your [READERS/LISTENERS] take the first stepto breathing better. Learn more about COPD and visit[INSERT YOUR WEBSITE] and COPD.nhlbi.nih.gov.

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Public ServiceAnnouncement (PSA) Outreach

(continued)

30-Second Live-Read Radio Script

The human voice can be sweet as music, but not for the millions of people with COPD – a serious lung disease that makes it hard to breathe. Many people with COPD – including some here in [COMMUNITY] – don’t even know it. That’s why [RADIO STATION] is raising our voices to help increase early diagnosis and treatment. If you or a loved one show symptoms, contact a health care provider. Learn More. Breathe Better at COPD-dot-nhlbi-dot-nih-dot-gov or [INSERT ORGANIZATION URL].

15-Second Live-Read Radio Script

The human voice can be sweet as music, but not for millions with COPD – a lung disease that makes it hard to breathe. Yet millions go undiagnosed. That’s why [RADIO STATION] is raising our voices for COPD awareness in [COMMUNITY]. Learn More. Breathe Better at COPD-dot-nhlbi-dot-nih-dot-gov or [INSERT ORGANIZATION URL].

Appendix:COPD

PerspectiveTemplates

Use the templates on the following pages to share your COPD perspectives. Take a photo of your note, then post to social mediatagging @BreatheBetter on Facebook and using the hashtags #COPDjourney and #COPDperspectives on Twitter.